Hi Mom--

I'm really sorry for your spread. I've had no problem with the Cymbalta, in fact I've felt a lot better since going on it and I sincerely hope you do, too. It's an antidepressant and I think it's helped me with that as well as the neuro pain. I also switched from Neurontin to Topamax, I think I might burn more but overall I don't feel all that much worse off. Could be that the snow has finally melted, I'm not sure...

Keep moving. And take some really hot showers. Persist in trying to get PT in your home. Maybe if you show up with a bunch of kids running around often enough they will give you home therapy! Keep on your PM docs for answers to the questions that other people on the board gave you for the blocks. Just stay motivated and stay in the fight, don't give up!

XOXOX Sandy

Hi Carrie! Thanks for writing me back. WOW.....our RSD sounds SO similar. It astounds me how this disease can spread SO quickly. I, too, hope they can get control over it and just stop it from going any further. Less than a week ago, I noticed the color changes in my hands, a few days later, the prickling feeling, and now the BURNING on my palms. When I hold something lightly, it leaves marks that look like I have put my fingers or palms down on a hot skillet and have severe burns. How this can all happen while my hands feel COLD to the touch (although sometimes hot and sweaty) is a mystery.

I had maybe 5 lumbar sympathetic's 1 1/2 months ago that HAD to help. I was in NO WHERE the amount of pain I'm in now. The pain in my feet has slowly crept back since my last one.....I am so deeply sorry for every one of you who experiences this. This disease is just wretched. It is terrible waking up every day wondering how much worse it's going to get THAT day. I think I am developing allodynia behind my knees, too. Does anyone have it there??? It aches just to lay in bed and have it touch the sheets.

What breaks my heart is that I have finally gotten to the point where I cannot hide my pain from my kids anymore. I have tried before now to "grin and bear it" and I am beyond that now. They see their Mom barely able to walk. My 5 year old daughter was crying today saying, "I don't think you're ever going to get better, Mommy". She was afraid I would leave her if I got worse. I promised her that no matter how badly I ever hurt, that I would NEVER leave her or Daddy or brothers. It just grieves me so much that SHE has to deal with this. I am an adult.....she is just a little girl. SHE should not have to deal with MY pain. Uggggghhhhh......

So, thank you Carrie......I know you have little ones too and understand how I feel. I do and WILL keep moving for them....no matter HOW badly it hurts. I'm going to start my own PT here until I can afford to get professional PT's. It's just all......too much right now. Thanks again for writing me back!! You're such a sweetie and are SUCH a blessing to this forum!!!

Hi Sandy!!! You actually brought up a question I may post separately. Do you turn colors in the shower??? ALL of my RSD areas turn blue/purple/red and swell in the shower. Once I start cooling off a little, I get mottled. I try not to make the temperature too hot or too cold......it HURTS for the water to touch the RSD.......but does anyone else get the color changes in water??? Every time I wash my hands they turn blue or red or mottled. It doesn't matter what the temperature is.

I LOVE your idea about showing up with a bunch of kids!!! My daughter would think it was an indoor playground and start throwing the big balls around!! I may make an appointment to see my GP. He may be willing to write the script for it. I do genuinely NEED it right now. My hubby MAY be about to start a job (much needed) but that would cause him to be gone a lot. I do not know how I would function. ANY doctors appointment exhausts me just from the effort of getting ready and GOING. I'm too tired to do much else for the rest of the day.

Yes, I will call his office tomorrow. Thanks for all the good advice!! I look forward to hearing of anyone else on Elavil or Cymbalta and how they managed on it!! Thanks again!!!

Hi Mom,

I am so sorry that you are suffering so much both physically and emotionally.

I just wanted to share my daughter Sarah's experience with an epidural. She was diagnosed with RSD in her ankle within 10 days of a sprain. Soon after she was referred to a pediatric aniesthesiologist who immediately put her in the hospital for a week-long epidural. During the process she did not realize pain relief; but within a few days of coming home her ankle pain stopped. On her first day back at school, she tweaked her ankle and the pain returned. At that point her doc followed up with a spinal nerve block and the pain again resolved.

In retrospect, if we had it all to do over again, I would have been more concerned about all the meds she was given. She was prescribed many of the typical meds in addition to antibiotics for a staph infection she developed from the epidural. When I asked if it was o.k. to be taking so much, the reply I received was, "yes, if her stomach holds up." Sadly, it didn't ... and within a few months she was diagnosed with RSD in her stomach. I know that you are trying very hard to be cautious about medications, using them only when you absolutely need to. I wanted to share this as it was in fact too many meds that we should have been most concerned about.

I will keep you in my prayers.

Jeanne

When you finally do get to some Occupational Therapy or Physical Therapy, be sure to say exactly that. They can have a ton of ideas on how to exercise while doing housework, along with reminders of the "right" and "wrong" way to do things. (For example, lift heavy objects with your knees, not your back.)

When a PT is doing this, though she/he can tailor everyday tasks to your particular condition. I once saw a therapist demonstrate how to pick up toys to someone with both a bad back and two bad knees, while getting some beneficial muscle movement at the same time.

If you are given a decent set of PT exercises, you may not need to have a lot of trips to the clinic or hospital. If you are a good learner, you can do much of your PT at home by yourself. A PT appointment once and a while to check things out might be all that is needed.

Take Care,

Mike